Year 2011

In 2012, our family was featured in a TV program called “Touch of Hope” hosted by Diana Ser. During the episode, we shared about how we got to know about Chloe’s diagnosis and the journey in looking after her. It was the very first time our family went on TV and we were pretty excited but yet, it was not easy to share about out struggles. Nevertheless, we were hoping to raise the awareness on rare disease in our society.

Year 2013

In order to express Mediacorp’s gratitude towards the support rendered by the audiences for the past 50 years, Ch 8 introduced a 10 episodes variety show called “The Joy Truck” spreading the love and warmth to every family in Singapore carried by this small truck. Rare Disorders Society (Singapore), founded by our family, became the first beneficiary and Chloe was featured in the first episode together with another 2 kids. It was an unforgettable experience for us, especially for Cayden (Chloe’s younger brother) who was only 9 months old. Thank you Mediacorp, for fulfilling our wish in bringing Chloe out for an excursion. We believe more people are now aware of what rare disease is and how they can show their support to us.

Year 2014

Once again, our family was invited to go on “The Joy Truck 2” meeting with a new family whose child was diagnosed with a rare condition. In this episode, we shared about Chloe attending school and she is becoming “less princess”. Daddy also shared some of the tips with the new family and invited them to join Rare Disorders Society (Singapore).

Year 2015

Our story was featured in a Chinese documentary series called “Blissful Living” in 2015. It was not easy because it brought back some of the bad memories. However, it served as a reminder for us that no matter what happened, we need to look forward and be grateful of what we have.

We are not asking for more, just a complete family and everyone staying happy and healthy!

Year 2021

Our family discovered Star PALS (Paediatric Advanced Life Support) – a paediatric palliative care service founded by Dr Chong in 2012 under HCA Hospice Care and provided free-of-charge to all patients – about nine years ago and initiated contact.

Read here

Year 2023

In 2023 Feburary, our family was featured in Morning Singapore to mark International Rare Disease Day 2023.

今天是国际罕见疾病日，你知道什么是罕见疾病吗？简单来说是每2000人中少于一人患上的疾病，那这种疾病就算是罕见。而本地有2000到3000名罕见疾病患者，当中有700人是儿童。今天的《#晨光聚焦》带你去了解，罕见疾病患者在日常生活中会面对什么挑战？他们又能获得什么样的援助？

http://bit.ly/3md5vPN

Year 2024

Kenneth Mah and Patricia Ng founded the Rare Disorders Society (Singapore) and have evolved it from a small support group of families to the charity organization it is today. They also bring personal experience to their mission as they journey through life with their daughter, Chloe, who has the rare genetic disorder, Pompe Disease. Chloe was diagnosed with the disease at seven months old, and has overcome death several times. Every two weeks, Chloe undergoes Enzyme Replacement Therapy at KKH Women’s and Children’s Hospital. We join Kenneth and Patricia on their emotional journey as they go through the procedure with Chloe, spending three days in the hospital with her.

Watch here

Year 2025

In season 2, this episode revisits familiar faces and follows their journeys forward, like four-year-old Nayla, born with Trisomy 18, who was admitted to intensive care and spent a month in hospital after a severe bout of pneumonia, forcing her parents to confront the possibility of losing her. The episode also checks in on teenagers Netra and Chloe, both taking tentative but meaningful steps towards attending school, as they balance medical needs with everyday aspirations. Meanwhile, Irfan’s story continues as his parents face another devastating discovery — that he is not the only child in the family affected by a rare genetic disease. 

Watch here